Wednesday, January 9, 2013

Last year, I wrote a piece for BLOOM called Why pictures matter. It’s a short essay about an insensitive ER doctor, and its occasion is a picture I came across on the Internet. It showed a teenage boy who’d had a bad fall, and who was bruised and disoriented. The ER doc had snapped the pic and posted it on his blog, not only violating the boy’s privacy but also—in my view—dehumanizing him, by putting him on display.

I thought of this after reading Paul Austin’s recent piece, also published here. In that piece, Paul, a physician, describes attending to a young woman with Down syndrome in the ER. Because he compares the woman unfavourably to his own daughter (who has Down syndrome), and because he seems to suggest that the woman’s humanity is absent or lost, you’d think I’d agree with the comments criticizing him. But I can’t do it, because I think that the writing is powerful and valuable. To me, it’s raised a really useful conversation about why we write about our kids, and what for, and what sorts of feelings we’re willing to welcome, and most of all, how we make sense of what we read.

Full disclosure: I know Paul (met him at a conference in Iowa). I’ve read an early version of the manuscript he’s working on now, and it’s fair to say we have very different senses of what it means to have a daughter with Down syndrome. For one thing, Paul’s a lot further along than I am—his daughter’s an adult, and mine’s 11—and for another, Paul is one of those few guys whose publicly stated inner turmoil makes mine look kind of mild. There were things that troubled me in Paul’s manuscript, and I said so to him. (I’m pretty sure that, in doing so, I ruined his week in a big way.)

But I made those criticisms in friendship, and as one writer to another, and as a fundamentally constructive act: that is, in hopes that the criticisms would lead to something better (in this case, a revised book). None of those criticisms, though, were horrorstruck condemnations of his character. It’s been troubling to read the comments section, particularly the bits that attack Paul personally, and though Paul has responded in his own post, I feel I have to speak up. Paul's a deeply decent man. He’s one of us. He proudly showed me texts from his daughter while we were chatting together, and that was truly moving to me: all of us with younger kids have the future in the back of our minds, and often in the front, so to see texts sent in real time from a real adult with Down syndrome gave me hope for the future. (Worries for the future, of course, are the subject of Paul’s piece.) In any case, the idea that Paul is a stereotypical Heartless Doc is categorically false.

That’s not to say there’s nothing to talk about. For me, the excerpt published in BLOOM walks right up to the line, and probably stomps on it a little bit too. I was uncomfortable, reading it. But I’m okay with that: the best writing ought to make us a little uncomfortable, and literature is about the mysteries that are not only unresolved, but perhaps fundamentally unresolvable.

In any piece of writing, context is crucial; and the overriding context of this piece is a man seeking to illuminate his own contradictions, as amplified by crisis. It’s memoir, and should be judged as such. If Paul were a clinical geneticist arguing that all people with Down syndrome are less human and therefore should be screened for, I’d be the first to reject his argument. But he’s not: he’s a writer of nonfiction, and as such he’s not advancing a proposition, but trying to capture the complex texture of experience. If as writers we truly value honesty wherever it leads, if we value—as I think we should—the uncertain and unresolved, then Paul's piece succeeds. And if we truly believe that our children are diverse, and that the families involved with disability are diverse too, then we need to accept the entire diversity of meanings that come from the experience.

What's most troubling about the excerpt, of course, is Paul's frank expression of distaste, and his relief that his own daughter is better off than his patient. I agree that this is troubling. But it should be noted that this is far from the first time that it’s been expressed. Marilyn Trainer, in her book Differences in Common, writes about the time when her son Ben began school at six. Trainer describes seeing older students at the school. It’s a long passage, but it’s directly relevant:

“Although Ben adapted quite well, I had a problem, and one which caused me considerable anguish and guilt. I’m not proud to admit this, but I found it very disturbing to see “older” kids with Down syndrome and older people with mental retardation in general. In fact, some of the students in their teens and twenties downright scared me when I thought in terms of the future. For one thing, I was bothered by their physical appearance. Some—particularly those with Down syndrome—were quite overweight. Others were extremely thin, and a few had very small heads and twisted limbs. Even more disquieting was how “out of it” many of the older students with Down syndrome appeared. They had a certain dullness of manner and facial expression that seemed so different from the high spirits that animated kids like Ben and his friends. I couldn’t help wondering . . . . Someday would Ben be like this too? I knew these feelings were not unique with me. I had discussed them with other parents who admitted reacting the same way.”

I don’t have a problem with Trainer’s writing, at all. To criticize it is to tell her she shouldn’t feel the way she did, or that she shouldn’t expose it to view. I don’t hold with either of those, as the first is absurd and the second is unreasonable.

In fact, on the issue of being human, I’ve always been far more troubled by a moment in Martha Beck’s Expecting Adam:

“If you’ll cast your mind back to high school biology, you may remember that a species is defined, in part, by the number of chromosomes in every individual. Adam’s extra chromosome makes him as dissimilar from me as a mule is from a donkey. Adam doesn’t just do less than a ‘normal’ child his age might; he does different things. He has different priorities, different tastes, different insights.”

I find this deeply problematic, not only because Beck’s biology is questionable, but also because she is implying that all people with Down syndrome are categorically different from all people without. She implies, in fact, that “they” are actually a different species, and that their “different” tastes and so on are actually a result of the chromosome. Not only is this very doubtful—tastes, FYI, are cultural—but it at least echoes some dangerous eugenic assumptions about human categories, and generalizes vastly about all people from a single child. It’s a useful contrast with Marilyn Trainer’s piece, or with Paul’s, both of which are rigorously focused on individuals, and which are rooted in the more difficult and mutable world of feeling. Both Marilyn Trainer and Paul Austin stay well away from generalizing about all people with Down syndrome—and Paul explicitly rejects the sentimental idea that a sweet character comes from the chromosome.

It should also be noted that the self-criticism leveled by Paul against himself is as harsh (almost) as anything present in the comment threads. I don’t think he’s trying to say that people with Down syndrome who are more severely affected are less human. I think—and here, the book’s title, and the ending sentence of the passage, are crucial—he’s saying that extreme pain threatens our humanity, no matter who we are. His pain comes from both identifying his daughter with his patient, and from resisting the identification—and from his awareness that that’s what happening, which is why he describes his own feelings in terms of perversity and shame. Those feelings are not presented as timeless biological truths. They’re presented as dramatic moments, and to make sense of them, you have to read the whole passage to see how the drama turns out.

The beginning of the piece draws a stark separation between himself and his patient, his daughter and his patient; but by the end of the piece, those distinctions have collapsed. In crisis, as he narrates, he shuts down empathy to work. In a quieter moment, he gives out his phone number, he opens his family to the family of his patient. What made the ending so moving to me was the quiet domesticity of the scene, which contrasts sharply with the controlled chaos of the ER. Ironically, in that very contrast, he sees the similarities between his daughter and his patient—and transforms his memory of the event. He actually wishes for his daughter to scream as loud as his patient, if that’s what she needs, and there’s an implicit recognition that that screaming does not lessen humanity, but expresses human need. Where he begins by wanting to separate his daughter from his patient, he instead finds commonality. Pain is what threatens our humanity, but pain is also what, as humans, we all share: everyone, Madison, Sarah, Paul, need something for the pain. It’s a powerful moment, and what makes it most powerful to me is the presence of Sally: she, in effect, gives him permission to feel what he actually feels.

I think this is something that readers should grant writers, even when we dislike what we see there. The alternative is to restrict the kinds of honesty that we are willing to welcome—and, by extension, to decide who is positive enough to belong to a community of parents. None of us, I think, is hurt by frank discussions of being conflicted. What hurts us, as parents of kids with Down syndrome and other disabilities, are generalizations that treat all those kids as the same—and an insistence that our accounts be finally celebratory or positive. Because if being positive becomes a requirement, then it risks becoming oppressive too.

George Estreich lives in Oregon. The paper and e-book editions of The Shape of the Eye, his memoir about raising a daughter with Down syndrome, will be out from Penguin this April.

7
comments:

George, In reference to Paul's book excerpt and the comments made, I couldn't agree more. Well said. In my opinion, sometimes as parents of kids with special needs we wear blinders and a mask of joy in order to deny the fear and uncertainty that roll around in our guts from time to time. None of us can know what the future holds for our kids, especially once we depart the scene, and that isn't like leaving behind an adult son or daughter who can be completely self-reliant and able to self-advocate. This is a challenging and long journey. Dare we assault one another for honesty? Even if we suppose that another person is "wrong" in the expression of their experience and their struggles, how do we help by castigating their character and their expression? Perhaps, if we could be honest with ourselves we could admit that our distaste is wrongly directed..l that we are really trying to keep reality at bay in our own lives. Perhaps, also, we are so tired of the assaults we receive from the "normal" citizenry, that when one of our own is honest it bumps a very sensitive bruise and we confluence the cause of both sources of pain together. Again... Be kind to everyone you meet, for everyone is fighting some kind of battle. LynnR www.pedalingbackwards.com

This is a powerful post Louise and provokes a lot of emotional reaction, and gives me pause.

What resonated with me the most is the following statement:"insistence that our accounts be finally celebratory or positive. Because if being positive becomes a requirement, then it risks becoming oppressive too."

This is very thoughtful, George. Thanks for your commentary. I didn't like the piece, but I appreciate your invitation to engage with it thoughtfully and to consider this father's honesty as he grapples with very complex emotions.

Thank you for this long, thoughtful post. It's funny, but I've never found words or haven't completely thought out and articulated what I feel is a sort of tyranny espoused by many in the disability community. Those of us who are writers, first and foremost, or have an ability to locate and then articulate great internal conflict often get beaten up the most when that authenticity comes out. I am quite drawn to those who express themselves well despite what it is that they're expressing -- which, I imagine is the provenance of the writer.

An interesting book for children is Darby the donkey (1983) by Australian author Esta de Fossard. It is all about a donkey who is fired up for learning and the social side of school and the travails he goes through with various animals inside and outside the farm. Darby is like 6-year-old Ben and the kids with high spirits.

And "Would you like to go to school; You might end up a mule" is a song. It is a wonderful song, but in some countries like India and others who use animals, it might not be right.

I am thinking of this as I listened and looked to Canadian entertainer/educator Charlotte Diamond and her song about "Life's Garden".

Positivity as a tool of oppression and oppression itself... We all share pain, yes, Estreich. And there is pain in reading and in writing and the consumption and production.

Thanks, everyone, for your thoughtful and honest comments. I'm really glad to see the direction the conversation has gone--away from personal attacks, towards discussing the writing and the issues. For all us, the way Down syndrome and disability are represented are extraordinarily charged issues, and there's no way for writing like Paul's not to provoke reaction.

I think that there are unanswerable questions here, and that we define ourselves in relation to them. For example: When we write publicly about our children, what are our responsibilities to the community at large? If we write about our own experience, is our only responsibility to be "honest"--and what does "honest" mean? Honest about what, and to what degree?

I don't necessarily agree that a greater degree of self-exposure makes for better writing. To my mind, there's a big difference between self-exposure and revelation.

The BLOOM blog welcomes comments from readers on issues that affect parents of children with disabilities. We moderate comments to ensure they’re on-topic and respectful. We don’t post comments that attack people or organizations.